Exploratory Study: Stress, Coping and Support among Parents of Children with Autism Spectrum Disorders

Exploratory Study: Stress, Coping and Support among Parents of Children with Autism Spectrum...
Nolcheva, Meri; Trajkovski, Vladimir
2015-09-01 00:00:00
Introduction: Each year more families are confronted with unique challenges related to raising a child with ASD. Parenting stress is a significant aspect of fulfilling the role as a parent, and having a child with ASD greatly influences the experienced stress. The literature review indicates that parenting stress is inversely proportional to family support and coping mechanisms. Aim: Appraising the stress level among parents of children with ASD, the coping mechanisms and the level of family support, in comparison with parents of children diagnosed with ID. Method: A group of parents of children with ASD (N=35) and a second group of children with ID (N=35) completed four questionnnaires: PSI-SF, Brief COPE, FSS and demographic questionnaire. The data was analyzed using t-test for comparison, Chisquare test for comparing frequency distributions and Pearson coefficient for correlation, with p<0.05 level of significance. Coresponding address: Meri NOLCHEVA Tome Arsovski nr. 23/6 1000 Skopje, Republic of Macedonia e-mail: mnolceva@gmail.com JOURNAL OF SPECIAL EDUCATION AND REHABILITATION : . (r=0,469) (r=0,567) . (r=-0,415) . : , . : , , , , Results: Parenting stress did not differ between the two groups. The coping mechanisms used by the parents of children with ASD showed that increased usage of distraction (r=0.469) and disengagement (r=0.567) increased the level of parenting stress. Family support (r=-0.415) is a key buffer and coping mechanism for managing the stress in parents of children with ASD. Conclusion: There are no differences in the level of stress, coping mechanisms and the level of support comparing parents of children with ASD and ID. Keywords: autism spectrum disorder, intellectual disability, parenting stress, coping mechanisms, family support . . . , , , , (1). () , , (2). . , , , , . , (3). Introduction Having a child with a certain disability can challenge his parents' perceptions of family life and being a parent. A parent's experience may vary greatly from his expectations before the birth. These challenges may be amplified in the case of autism, as parents discover that the natural parenting styles, skills and approaches suggested for typically developing children may prove inefficient, reducing a parent's sense of parental competence (1). Autism spectrum disorder (ASD) is a severe developmental disorder, characterized by social deficits, impaired communication and restrictive and repetitive patterns of behavior (2). The families of children with autism are confronted with challenges that are different from those faced by most families. The challenge starts early. It lasts a lifetime and it is associated with other problems such as personal, professional, marital, and financial. These problems occur across a wider social context, which has its own pattern of unique stressors (3). Autism is difficult for parents to cope with for several reasons. First, the behaviors associated with autism can be extremely anti85 . , . , , . , , , . , . , . , . , è , (4). , , . , (5). è . , . , è (6). . , . (7). social and disruptive. Repetitive behaviors and restricted interests, temper-tantrums, self-destructive acts and the problems with language make parenting extremely difficult and may preclude a normal family life. Second, the difficulties in getting an accurate diagnosis and proper treatment are often considerable. Third, the public has little knowledge of autism and often is insensitive to the public behavior of children with autism. This problem may be due to the normal physical appearance of such children ­ a fact that covers the reality of their disability. Finally, as of this date, there is no cure for autism. Although the treatment may reduce many of the behavioral problems, families know the stresses they will face in caring for a child which has a serious disability (4). The major efforts of clinicians, educators, and researchers have been designed to help the parents of children with autism to do better for their children, and secondarily and incidentally to help them achieve greater satisfaction in their own personal lives. But, there is an increasing awareness that these parents are themselves persons at risk for psychiatric and stress disorders (5). During the last twenty years parents have become more directly involved in the treatment of their children. Parents are no longer viewed as the cause of their child's problem, but rather recognized as partners in the treatment. Parents need functional coping strategies in order to succeed in their new role (6). The parents are the single most important resource for every child and must be an integral part of the service-delivery and the planning process itself. Given the fact that children spend their early years of life under the constant supervision of their parents, that means their parents can serve as primary educators by directly teaching their children throughout the day and in a variety of different settings. There is a shift in the focus of intervention from child-centered to familycentered (7). JOURNAL OF SPECIAL EDUCATION AND REHABILITATION , (). (N=35) (N=35). , 12- . 1. , , . , : 1. ­ (4- ) (PSI-SF), Abidin (2012), 36 , , ( ) ( ). , - , , . 90- (8). 2. (Brief COPE), Carver (1997) 28 , 14 . 1 ( ) 4 ( ) (9). 3. (FSS), Dunst, Trivette Jenkins 1984, 19 , 1 ( ) 5 ( ). , Method The aim of this research is to appraise the level of parenting stress, and to identify which coping mechanisms are used in managing the stress while also appraising the level of family support among parents of children with autism spectrum disorder (ASD), in comparison with parents of children with intellectual disability (ID). The sample is containedfrom parents of children with ASD (N=35) and parents of children with ID (N=35). The requirements included being a biological parent and being the parent of a child that is 12 years old or younger. Detailed demographic data is presented in table 1. In this research we used descriptive analysis, correlation and comparative analysis, as well as documentation analysis and survey. The instruments used in this research were translated into Macedonian and given authorization for their usage from the appropriate publishers. The instruments used were: 1. Parenting Stress Index ­ 4th edition ­ Short Form (PSI-SF) developed by Abidin (2012), contains 36 items, and the given responses are ranged on five-point Likert scale, from SA (strongly agree) to SD (strongly disagree). The questionnaire offers quick assessment of the experienced parenting stress, and it contains primary components from parent-child system, with focus on the parent, on the child, and on the interactions between them. Points from the 90th percentage or higher are considered as clinically significant (8). 2. Brief COPE, developed by Carver (1997), contains 28 items that measure 14 conceptually differentiable coping reactions. The responses are ranged on four-point Likert scale with four stances and range from 1 (I haven't been doing this at all) to 4 (I have been doing this a lot) (9). 3. Family Support Scale (FSS), developed by Dunst, Trivette and Jenkins in 1984, includes 19 items that are rated on a fivepoint Likert scale ranging from 1 (not at all helpful) to 5 (extremely helpful). The sum of the answers reflects the overall support, and higher total support score means that the (10). 4. . ­ SPSS 21 Windows. - (X2) , t- (r) . p<0,05. perceived support is higher by the person that fills the questionnaire (10). 4. Demographic questionnaire, which aim is to gather general data for the parent and the child. The statistical analysis of the gathered data utilized the statistical package for social sciences ­ SPSS 21 for Windows, applying Chi-square test (X2) for comparing the frequency distributions, t-test for comparison of two independent samples, and Pearson coefficient for correlation (r) for calculating the relationship between the variables. A statistically significant difference was set to a level of p<0.05. 1 . , 40,83±4,78, 39,71±6,47. 97,14% M 2,86% 85,71% , 8,58% 5,71% , . . , 71,43% , 45,71%. , 50.859±61.483 (825±998 ), 27.956 ±11.941 (453±193 ), . 2014 28.000 (454). , , . 9,43±2,19 Results The demographic data of the sample presented in table 1 shows that both groups did not differ in terms of gender, but mostly was from mothers. Parents did not differ in age, where the average age of parents of children with ASD is 40.83±4.78, and for the parents of children with ID is 39.71±6.47. The sample is assembled from 97.14% Macedonians and 2.86% Serbs in the group of parents of children with ASD, and 85.71% Macedonians, 8.58% Albanians and 5.71% Serbs in the group of parents of children with ID. The language of the parent did not influence the completion of the questionnaires. Most of the parents from the sample are married and have finished higher education. In relation with the employment status, in the sample of parents of children with ASD, 71.43% of the parents are both employed, and in the sample of parents of children with ID that number was 45.71%. The overall income per month in the household in the sample of parents of children with ASD was the average values 50.859±61.483 denars (825±998 euros), while in the sample of parents of children with ID was 27.956 ±11.941denars (453±193 euros), where the average overall income per month according to the States' statistical office in R. Macedonia in 2014 is 28.000 denars (454). Most children in both groups were male and the group with SD and the group with ID JOURNAL OF SPECIAL EDUCATION AND REHABILITATION 9,17 ±2,57 , . , 4,35 ±2,00, 3,13±2,47. . 1. did not differ regarding gender. The average age of the children with ASD was9.43±2.19 and 9.17±2.57 in the children with ID, with no significant difference in age between the two groups. The average age of diagnosis was 4.35±2.00 in the children with ASD, and 3.13±2.47 in the children with ID. Most children in both samples were diagnosed by a team of professionals. Table 1. Demographic data of the sample N / Gender / Male / Fe ale / Age / Range / Average values /Nationality / Macedonian / Albanian / Serbian /Marital Status / Married / Divorced / Widowed / Education / High School / Associate Degree / Higher Education / Employment status / Both parents employed () / One parent (father) () / One parent (mother) / Both parents unemployed /Income () / Range in denars (euros) () / Average values in denars (euros) / Child's gender / Male / Female / Child's age / Range / Average values / Age of child at diagnosis / Range / Average value / Diagnosis provider / Doctor / Team of professionals / Pediatrician / Neuropsychiatrist / Psychiatrist / Parents of children with ASD 35 8 (22,86%) 27 (77,14%) 32-54 40,83±4,78 34 (97,14%) 0 (0%) 1 (2,86%) 33 (94,29%) 1 (2,86%) 1 (2,86%) 12 (34,29%) 0 (0%) 23 (65,71%) 25 (71,43%) 6 (17,14%) 3 (8,57%) 1 (2,86%) 10.000-280.000 (162-4.546) 50.850±61.483 (825±998) 28 (80%) 7 (20%) 5-12 9,43±2,19 1,5-10 4,35±2,00 1 (2,86%) 24 (68,57%) 2 (5,71%) 6 (17,14%) 2 (5,71%) / Parents of children with ID 35 10 (28,57) 25 (71,43%) 28-51 39,71±6,47 30 (85,71%) 3 (8,58%) 2 (5,71%) 32 (91,43%) 2 (5,71%) 1 ( ,86%) 14 (40%) 5 (14,29%) 16 (45,71%) 16 (45,71%) 13 (37,14%) 3 (8,57%) 3 (8,57%) 12.000-60.000 (194-974) 27.956±11.941 (453±193) 25 (71,43%) 10 (28,57%) 4-12 9,17±2,57 0-8 3,13±2,47 2 (5,71%) 16 (45,71%) 9 (25,71%) 8 (22,86%) 0 (0%) / Test statistic X2(1)=0,229 t(68)=0,819 0,584 0,416 X2(1)=0,699 t(68)=0,451 0,403 0,654 , , ( 2). 2. t- / Parents of children with ASD 94,94 27,11 30,00 10,81 30,86 8,79 34,09 9,66 19,17 13,69 7,69 14,71 4,64 3,97 2,43 3,43 The comparison between the groups in total stress level and its subsystems, the coping mechanisms and the level of family support, did not point out statistically significant difference in either of the variables between the parents of children with ASD and parents of children with ID (table 2). Table 2. t-test results for comparison between the two samples PSI-SF /PD -/P-CDR /D Brief COPE / Engagement / Distraction / Disengagement / Cognitive reframing FSS / Informal Support / Formal Support / Parents of children with ID M 92,57 21,86 9,51 30,29 8,24 31,03 7,49 31,26 17,91 12,97 7,66 13,80 5,76 3,97 2,53 3,95 F 2,325 1,275 0,120 3,343 0,720 0,495 0,284 1,160 df t 0,403 -0,117 -0,084 1,369 1,005 1,035 p 0,688 0,907 0,933 0,176 0,318 0,454 0,962 0,304 0,408 0,753 32,89 7,25 12,52 2,66 34,03 7,50 11,72 2,48 0,031 0,422 68 -0,394 -0,411 0,695 0,683 7,23 4,50 7,89 4,30 0,000 -0,624 0,534 * PSI-SF (Parenting Stress Index ­ Short Form) ­ ­ /PD ­ (Parent Distress) -/P-CDR ­ - (Parent-Child Dysfunctional Relationship) /DC ­ (Difficult Child) Brief COPE ­ FSS (Family Support Scale) ­ / , , . 3 . , Because this study was aimed at particularly understanding stress in parents of children with ASD, additional analysis was conducted on how coping mechanisms and family support are correlated with the level of experienced parenting stress. Table 3 shows the correlation between coping mechanisms and stress in parents of children with ASD. From the maladaptive coping strategies the categories distraction and disengagement as coping mechanisms JOURNAL OF SPECIAL EDUCATION AND REHABILITATION . , (r=0,402) (r=0,549). , , , r=0,467 , r=0,554, p<0,01. , , . r=-0,342 r=-0,375 , , . 3. / Engagement / Instrumental support / Active coping / Planning / Emotional support / Distraction / Self-distraction / Humor / Self-blame / Venting / Disengagement / Substance use / Behavioral disengagement / Denial / Cognitive reframing / Acceptance / Religion / Positive reframing **p<0,01 *p<0,05 were statistically significant and the positive correlation accentuates this increase in parenting stress. From the category distraction, self-distraction (r=0.402) and selfblame (r=0.549) were statistically signifycant. The other category, disengagement, behavioral disengagement, where the correlation is r=0.467, and the subscale denial, with correlation r=0.554, with significance at level p<0.01 were statistically significant. From the cognitive reframing category, which includes the adaptive coping mechanisms, the subscales for acceptance and positive reframingwere significantly and negatively correlated to parental stress. The negative correlation r=-0.342 for the subscale acceptance and r=-0.375 for the subscale positive reframing, indicates that with increasing usage of acceptance and positive reframing as coping mechanisms, the level of parenting stress decreases. Table 3. Correlation results between coping mechanisms and parenting stress in the sample of parents of children with ASD M 19,17 4,49 5,63 4,43 4,63 13,69 3,40 3,20 3,37 3,71 7,69 2,14 2,86 2,86 14,71 6,03 3,43 5,26 4,64 1,46 1,75 1,29 1,46 3,97 1,29 1,35 1,17 1,18 2,43 0,43 1,33 1,33 3,43 1,74 1,42 1,65 r -0,244 0,089 -0,292 -0,227 -0,306 0,469** 0,402* 0,320 0,549** 0,231 0,567** 0,296 0,467** 0,55 ** -0,284 -0,342* 0,169 -0,375* p 0,158 0,611 0,088 0,189 0,074 0,005 0,017 0,061 0,001 0,182 0,001 0,086 0,001 0,001 0,98 0,044 0,330 0,027 , 4. , r=-0,437, , . (r=-0,385) (r=0,367), , , , . , , . , r=0,415, , . 4. Regarding the perceived family support, the results are presented in table 4. The category of total informal support showed statistical significance, which yielded a strong negative correlation of r=-0.437, which points that with increased informal support, the level of experienced parenting stress decreases. Significant from this category were spouse support (r=-0.385) and informal support (r=0.367), which includes support from friends, the other children, neighbors, other parents and the church. The category of formal support, which includes the professional services, did not prove to be statistically significant. The total family support or the total score from the scale for assessing the family support showed a correlation coefficient of r=-0.415, which is statistically significant, and the given negative correlation indicates that with increased level of total family support parenting stress decreeses in parents of children with ASD. Table 4. Correlation results between family support and parenting stress in the sample of parents of children with ASD 2,74 1,20 1,12 0,79 0,87 4,50 1,12 12,52 r -0,437** -0,188 -0,385* -0,367* -0,288 -0,111 -0,111 -0,415* p 0,009 0,280 0,022 0,0367 0,288 0,524 0,524 0,013 / Total informal support / Kinship / Partner support / Informal support / / Programs/Organizations / Total formal support / Professional services / Total family support ** p<0,01 * p<0,05 7,46 2,23 2,55 1,42 1,26 7,23 1,81 32,89 . , . . 92 Discussion Being a parent itself carries a certain degree of stress in accomplishing the daily obligetions. Stress is additionally affected if the child has developmental disability. Throughout the literature review it can be seen that parenting stress is related generally with the disability. In this research there was no JOURNAL OF SPECIAL EDUCATION AND REHABILITATION , , , - . Silva Schalock (11). , , . , , (12). - , , , - , , , . . , , (13). . . . , difference between the experienced parenting stress between the two diagnostic groups. Thiscould be due to differences in the sample, because many studies from the Anglo-Saxon literature are indicating exactly the opposite. In their research Silva and Schalock found that the parents of children with ASD are experiencing four times higher stress in comparison with parents of typically developing children, and two times higher stress from parents of children with other developmental disorders (11). Other research, on similar topic, can be found in Macedonia conducted on parents of children with autism in comparison with parents of typically developing children, in which the same instrument for measuring stress was used. Naskovska and Belevska from their research conclude that the parenting stress in parents of children with autism is signifycantly higher compared with the parents of children with typical development, and in all of the three domains that measure the overall level of stress, the parents of children with autism scored significantly higher levels of stress (12). Studies which compare the stress scores between parents of children with ASD contrasted with parents of children with other disability, offer as explanation for the higher levels of stress in parents of children with ASD, differences in the behavior problems, aggression, obsessive-compulsive rituals, sleep problems, or the externalizing aspects which have major influence on the family. Interesting finding is that they found no association between the autistic symptoms and the parenting stress. Instead, stress was most often associated with behavior problems, which increases stress and emotional problems in parents (13). The adaptation process is difficult. On the positive side, this includes overcoming early crisis and gradual adaptation of the family's experience of living with a child with autism. The negative side is that it reflects the persistency of the disorder and its long term effect on the family. Successful coping , (14). , , ( , , ) (15). , , . Sivberg , (6). , Wang, Michaels Day , , , . , , . , (16). , 162 , , , 94 usually is a long term process, where the affected members of the family gradually accumulate skills and develop perspectives for their situation, which helps them cope with the problem (14). The awareness of some of the variables that affect the functioning of the family of a child with autism gives opportunity to take into consideration educational, support and therapeutic interventions, which have opportunity to empower the family functioning (ex. parent training, support groups) (15). Throughout the literature review, when a group of parents of children with ASD was compared with group of parents with other developmental disabilities or a group of parents of children with typical development, was found that parents of children with ASD use more maladaptive coping mechanisms, which results in increased level of experienced parenting stress. Such results were reported by Sivberg, who found that parents of children with autism used more strategies that included avoidance and distancing, while the subject from the control group used more problem focused strategies (6). Similar to this study, the research conducted by Wang, Michaels and Day, found that the coping mechanisms that were most used from the total sample were acceptance, active coping, positive reinterpretation and growth, repressing competitive activities and planning. The sample of parents of children with autism, in comparison to parents of children with other developmental disabilities, planning stood out as a coping mechanism, and it was increasing in usage if parenting stress increased. The authors also emphasized that the parents of children with autism in their study reported major usage of active coping mechanisms, which reflected that the sample contained resilient and dedicated parents (16). In a Polish study conducted on a sample of 162 parents of children with autism, Down syndrome and typically developing children, assessing the parenting stress and the coping mechanisms JOURNAL OF SPECIAL EDUCATION AND REHABILITATION . , (17). Benson 113 , . , (18). . , . , . , . . Mekki 128 , . style, gave similar results in relation to the coping mechanisms used by the parents between the investigated samples. Parents most frequently used problem-focused coping mechanisms, which are associated with decreased level of stress, and the emotion-focused coping mechanisms which are associated with increased level of parenting stress. In contrast, avoidance as a coping mechanism did not show significant association (17). Benson's research, conducted on a sample of 113 mothers of children with autism, found that using coping mechanisms from the category disengagement has negative effect on the wellbeing of the parent, while distraction and avoidance did not show any connection or influence on the wellbeing of the parent. As moderators of stress, coping mechanisms from the categories engagement and cognitive reframing, were correlated with increased levels of wellbeing in mothers of children with autism (18). Managing the stress that parents experience while taking care of their child with ASD or ID requires utilization of a wider range of adaptive mechanisms. And even though the maladaptive mechanisms have their own benefits with limited application, they are increasing the level of parenting stress. Although past studies assumed that increased usage of maladaptive coping strategies by the parents of children with ASD would occur, research from the last decade shows that there are no differences. That may be due to the advances that have been made in the field of early diagnosis and even earlier onset of treatment, but that is left to be researched. Family support or relying on family support is also considered as coping mechanisms often used by the parents of children with ASD. In the research by Mekki conducted on a Canadian sample of 128 mothers of children with ASD, relying on family or social support was distinguished as one of the most frequently used coping mechanisms. The , . , , , , , (19). Kissel, 64 , , (20). , , . , - /, , , (21). , , , . , (22). , , 96 author points that social support is useful for the mothers, especially after receiving ASD diagnosis for their child. Insufficient knowledge of the disorder probably will set the mothers on a path for searching for answers. In other words, parents will search for informative support, requesting support in managing their child, even formal support, searching for support from their closest friends or family looking for emotional or informal support (19). In the research conducted by Kissel, which included sample of 64 parents of children with autism and parents of typically developing children, they found that there is no significant difference between the samples in the perceived family support, yet still the parents of children with autism reported higher levels of parenting stress (20). Because there was no difference in the perceived support and because the literature on this subject is small, future research is needed to focus on the subject of how support affects positively the adaptation of parents and how that support affects successful family functioning, in order to be implemented in practice. In Macedonia, Chichevska-Jovanova and Dimitrova-Radojchikj came to the conclusion that the greater support and family support the parents are getting will be from their closest family, such as grandmothers and grandfathers, and the siblings of the child (21). Rising, or bringing up a child with ASD, asks for excessive time and energy and can have a negative effect on the marital relations, the attention devoted to the other children and the work opportunities for the ones that take care of the child. The parents can find themselves withdrawing from social relationships and recreational and social events, the very same activities that could serve as a moderator of the stress that is associated with caring for their child (22). In contrast, studies establishing the positive adaptation in families of children with special needs have emphasized the positive aspects, that the children with special needs JOURNAL OF SPECIAL EDUCATION AND REHABILITATION (23). . , , 90- , . , , , , . , . , , , /, , /, . , , . , . have positive input and that some families not only survive their experience but become stronger by using stress as a catalyst to improve their functioning (23). Conclusion The conclusion that can be drawn from this research is that the parents of children with ASD do not differentiate in the level of experienced parenting stress, in the coping mechanisms which they use to manage the stress and in the perceived family support, in comparison with parents of children with ID. Although the average scores from both samples are showing significantly higher stress scores, in other words, the level of parenting stress is in the 90th percent, which shows clinically significant level of stress. Increased use of self-distraction, self-blame, behavioral disengagement and denial, as maladaptive coping mechanisms, was found to increase the level of parenting stress in parents of children with ASD. From studying the adaptive coping mechanisms it can be concluded that with increased use of acceptance and positive reframing as coping mechanisms, the level of parenting stress in parents of children with ASD can be decreased. In relation to family support, the results are indicating that with increased total informal support, which includes kinship support, spouse/partner support, informal support or support from the immediate surroundings, and support from programs/organizations, the level of experienced parenting stress decreases in parents of children with ASD. With increased perceived family support in parents of children with ASD, including the formal and informal support, the level of parenting stress decreases. Kinship support and spouse/partner support, or in other words support from the immediate surroundings of the parent proved to be very important. . . , . . , , . , . , . , , , . . . 98 Limitations and contributions The limitations of this research include small and convenient sample. In the future it is recommended longitudinal research on a larger representative sample to reinforce the validity of the results and to study in more detail the effects of family support and coping mechanisms on parenting stress. Further, the results of this research were taken only from the parents. Future research could include using autistic symptoms as an additional variable that affects the parenting stress. Also, there is a small percentage of fathers included in the sample, which we cannot generalize that the results would be applicable on both parents. As a future research recommendation is comparison of the variables stress, coping mechanisms and support between mothers and fathers of children with ASD. Another limitation is the severity of the symptoms of the child, because those symptoms varied in both of the groups. Further limitation is that all of the parents which are included in this research are already receiving professional support, which prevents us in generalizing, because parents who are not receiving appropriate family support were not included, like ones that live in rural areas and non-developed areas. The aim of this research was not to point out the negative aspects of having a child with ASD or ID, nor to diagnose problems in the parent-child relationship. The aim was to show future researchers and practitioners the way parents of children with ASD are managing the requirements that are involved with the care of a child with autism, in order to direct the attention to the areas where parents require additional support and where the parents need to develop skills for coping with the stress that they are experiencing while taking care of their child with ASD. This study with its findings and conclusions contributes to the theory and practice in the JOURNAL OF SPECIAL EDUCATION AND REHABILITATION . , , , , . . , , . , , , . , , . Dr. Susan Costen Owns . . /
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Exploratory Study: Stress, Coping and Support among Parents of Children with Autism Spectrum Disorders